OK, here goes. I have barely written all summer. My 2015 goal was to fix up my young adult/kids novel and finally start getting it out. I sat down multiple times this summer and struggled with it. Major writer's block. But there's more. It's the Lyme and maybe my adrenal system. I'm tired. Like, all the time. I can exercise but I'm back to lying down after I shower, even if it's just for a few moments. And my vocabulary recall is a bit sabotaged.
On a positive note, my daughter is doing better so far this school year. Not only is she performing academically (and the school/teachers have been extremely supportive,) but she can run again without gasping for air! She used to be very fast. (Where she and my son got their speed, I do not know--maybe some latent gene in me since my brother is winning races still.) Or from my husband's side. Air hunger has abated with Babesia treatment. Hurrah!
But my son is struggling still. Joint pain and focusing issues; we had to stop treating the Lyme for a bit because of bad herxes. Now he's paying for it.
And I wonder--when will this hell end? OK, perspective here: he's better than he was years ago. I've got to remember that. He's better than he was six months ago.
Both my kids started a band this summer with friends and lo and behold--they're actually GOOD! My son started as the vocalist, but then decided he wanted to learn electric bass and he's taken to it. Like, amazingly. He pursues his music the way he did his juggling and the unicycle riding. This is the perseverance that will get a kid with PANDAS through life. My daughter is the drummer who tells her brother to focus, the one who is constantly writing poetry and song lyrics, sometimes from the perceived perspective of her brother (can we talk about empathy?)
I've hit a roadblock though. I want a do-over. I'm sick and tired of the financial issues, of things around the house not getting fixed, of my son and me not getting fixed, of my daughter stressing and distraught, of my husband feeling like we're kinda stuck. I hear about other kids and their multitude of successes and activities. Let's face it, my kids are succeeding because they are more than their diseases. But there's no catching up to the "rest" of the world.
I feel like a complainer. A whiner. I sense stresses around every corner. I work extra hard to be kinder to everyone when I feel like crap inside. I have to kick myself to make gratitude lists when life keeps taking its punches. I just don't have the energy to keep up.
If life were a filmstrip (remember those?), I'd scoot us back a few years. The summer that my son was 3 and my daughter 1, we joined a fitness club. I used to leave the kids with the babysitters in the playroom while I worked out, then take them swimming, then sometimes have dinner there (until my husband complained about the bills!) and then to the playground. We'd drive home, past the train station and the kids would always get excited if a train was coming or going. Life was simple, sunny, in a summer of gold and sky blue.
If I had a do-over, my kids wouldn't have had Lyme then or at any time. We'd have more money, be able to take interesting vacations, have more joy in our lives. Not that money buys joy--sadly, even John Caudwell's billions can't protect his family.
But, if I hadn't been struck with these obstacles, I wouldn't have met so many wonderful people. I wouldn't know that this world of Lyme even existed. Lyme was relegated to "another person's disease." I would not have had my character tested. I would not have hired an advocate and finally an attorney to represent us when dealing with a school district. I would not have the scientific knowledge about the brain and medical triggers that I do now. I would not be keeping this website. I might not have even taken a bite out of Lyme Disease.
If life were a movie and I could rewind it, I would hope to have the strengths I've gained in the last 6 years, along with more joy, more health, more optimism. But perhaps that's not how strength is forged. Perhaps I needed to know a different kind of suffering in order to become who I am meant to be.
I just want to get there already. Enough with becoming. I want to pull along all my friends and sister PANDAS/Lyme moms and finally reach that destination in which all of our kids as well as ourselves are healthy. We all need a do-over, and if not that, a leap ahead, a vision that all will be better someday, that our suffering and hard work is not in vain.